Hello, hello! Happy Tuesday!
We interrupt the regularly scheduled programming today here on Mix and Match Mama so that I can politely pull out my soapbox and step up for a minute. I had another fun post scheduled for today but have decided to put that one aside for the time being just to (hopefully) encourage and help any of you mamas or caretakers out there new to advocating for your kiddos’ health/medical/care/etc.
I am certainly not a medical professional or an expert in this field AT ALL, but I am a mom to four kids…and each one of them has been put under general anesthesia for at least one surgery or procedure and one little champion of mine…
…has had TWENTY THREE surgeries and been put under additional GA multiple other times for MRIs. So, I’m not an expert, but I am mom who would like to encourage some of you out there new on the journey with your kids who either have life long health issues, temporary health problems or maybe it’s even as simple as your kid has stitches from a cut or a broken arm (something not super, super serious)…DO NOT BE AFRAID TO ADVOCATE FOR YOUR KIDS.
I know, I know, I know, that sounds so simple and obvious, but when you’re “just a mom” and people with a whole lot of training, expertise, experience, knowledge, power and authority are telling you things, it can be super intimidating and easy (even for an Enneagram 8 like me!!) to stay quiet.
They’re the experts. They’re the authority. They’re the ones with all the knowledge AND THAT’S SO TRUE, but that’s YOUR KID, so do not ever be afraid to speak up, ask questions, make them slow down, take their time, explain more, answer more questions, show you that scan again, go over that option another time, give you a referral to another doctor…that’s YOUR KID, your mama instinct counts just as much as their degree.
Now, yesterday went fine. I absolutely love Ashby’s current team of doctors and everyone we dealt with yesterday was just precious, buuuuut I did have to put my foot down FOUR TIMES about an issue. I’ve realized over the years, that often lack of communication between the doctor and then other amazing people helping is *usually* our problem. Everyone is so sweet and kind, but if it’s not on their orders, they’re going to say no (understandable), but as a mom, if you know it should be on their orders, you have to press on. You can’t let that “no” stick just because you don’t want to rock the boat. You can lovingly, but with parental authority, push more until everyone is on the same page. That’s advocating. Your kiddo needs you to do that sometimes.
If you’re new to this sort of thing, here are my off the cuff pieces of advice for you (and please chime in other ladies out there who have experience in this too!):
1: Write down questions before you to your appointments, and then write down answers during the appointments as well as other notes. I like to do this on my phone. I do it that way because often, we’re out and about when Ashby will mention an issue/show me something on her arm/have a side effect that I want to address at our next appointment, so it’s easy for me to type it all in my phone.
2: Keep records of your kid’s medication and dosage amounts also on your phone. You might give them that pill twice a day and think you’ll never forget the name and dosage, but trust me, you get into an emergency situation/you’re overwhelmed by something else and you will forget when it’s pertinent for someone (an EMT, a different doctor, the pediatrician who doesn’t prescribe it, a hospital employee, etc) to know.
3: Create a relationship with your pharmacist. With Ashby’s medications, we have to use two different pharmacies, and I’ve gone out of my way to really get to know both pharmacists. I need to know them well and for them to know me so that we can both work together to make sure Ashby’s taking the right medicines (especially when we introduce other medications like maybe an antibiotic if she were to get strep, etc), make sure we don’t need to add or subtract from her dosage due to growth/side effects/lifestyle issues…whatever. I am on a first name basis with both and their partnership has been just as fundamental to Ashby’s well being as the medical doctors.
4: If something doesn’t seem right/feel right, speak up! Surgeries, MRIs, other scans, bloodwork, injections, things like that are very routine for certain people who administer them to kiddos all day long. I love that it’s routine to them because that means they’re probably really good at their job, buuuuut you know your kid and you were the one in the appointment with the actual doctor/surgeon, so if something seems off, don’t stay quiet about it. Ask questions, probe a bit deeper and if nothing else, you’ll probably get a ton of loving confirmation that will make you and your kiddo’s experience much better. Trust your gut.
5: Don’t be afraid to switch doctors. I love, love, love, LOVE Ashby’s team of doctors. They’re the most amazing people. That being said, when one of our beloved surgeons retired (after operating on Ashby TWENTY TIMES), we were sent to another doctor in the same field. We went to our first appointment, and she HIT THE PANIC BUTTON HARD. Here I am with Ashby for a “routine” introductory appointment with her new-to-us doctor, and what was supposed to be a “typical” 30 minute visit ended up being four hours of her trying to get Ashby in for emergency surgery. UM, WHAT? She was saying things about things no other doctor had ever said to me. She was talking about an ambulance coming to get us to take Ashby to another hospital so that we could get her into surgery that day. She was freaking out and freaking me out too. I told her she needed to give me a minute to call Ashby’s other doctors….a request she did not love…but I wasn’t about to send my kid into surgery for something no one else had ever mentioned. Fast forward about two hours and other doctors were like “holy cow, that’s a NO” annnnnnd at one point, someone called the retired doctor who called me on my cell phone (first time ever) and told me to take Ashby and walk out.
Needless to say, we asked for a new doctor and haven’t been back to this one 😉 .
If a doctor doesn’t feel right to you, what they’re saying doesn’t add up, you have questions that need answers…tell them to hold on a minute and catch your breath, mama. They might be 100% right, but this is your baby, so make sure you’re truly making this decision and not being told what to do. Perhaps your story isn’t as dramatic as ours, but if you just don’t love something about your situation and think you need a second opinion (no matter how silly or small it sounds in your head), get it. Get it.
6: Take a lot of photos and videos of your kid’s health issue. You would be amazed how often doctors thank me for showing them photos/videos of issues we are having at home that might not be presenting at the appointment. Over documenting is always better than under documenting.
Anyway, my two cents for your Tuesday. Like I said earlier, yesterday went really well! I don’t mind at all nicely (and firmly) reminding the sweet people who love these kids so much at the hospital that we had a different plan and if they could please double check, that would be great. It’s mostly about communication, y’all. If everyone communicates then your kiddo benefits.
I think advocating for your kid (whether medically or perhaps at their school, your church, your sports team, whatever!) is a learned skill. The very first time that Andrew, Ashby and I went to the hospital to meet with Ashby’s “team”, she was only two years old. We went into this conference room where 6 different surgeons and specialists sat around a table along with other people in the medical field who just wanted to listen, take notes and observe (as it’s rare to have a KTS patient) sat behind them. There we were…three people without a clue listening to experts discuss major health issues about our daughter. When I got in the car, I cried on the way home because I felt so overwhelmed. Over the years, I’ve taken really good notes, asked a lot of questions, had a lot of opportunities (unfortunately) to see this work great and not so great, made friends with people who had a vested interest in helping, did research and asked more questions. I’m not AT ALL as knowledgeable as them when I go into that room now, but I’ve learned to speak up. They’re all so sweet! They like it when I ask questions. They like explaining things and helping me better understand. They never mind! I just had to get over being intimidated and learn to speak up.
Thank you for coming to my TED Talk 😉 . I’m sure I’m not doing this post justice, but coming right away from the hospital today, I just wanted to encourage you out there to advocate for your kiddos even when you’re intimidated. You’re their person. They need you to speak up.
Other mamas with ideas and tips, please share!
If you’re looking for something light to listen to today, The Bestie Breakdown has a new episode up! Enjoy! xx